Alexander Arcani MamaniBlind and Deaf Alexander is 18 years old and will be 19 August 5, 2008, he remembers that at agethirteen he went blind, and at age fifteen he had a notable loss of hearing, admittingthis to be his fault, this is how his story begins,

“I didn’t take care of my eyes, I worked with my dad since I was a small kid with a lot of building materials, likecement that would go in my eyes” “I was also loosing my hearing, this also, was my fault because I had bad friends who threw a firecracker near my ears and it exploded and that minute I heard a loud ring and I couldn’t hear after that, since that moment I became a person with disability, I felt very sad because I couldn’t learn anything,my mom would pick up after me in my room, she would bring my food, I wasworthless, I didn’t leave my house for more than a year, I was so afraid!” “Until one day someone came to me and said that I could be taught, I could keep onstudying and go back to school to learn even as a person with a disability”

AcceptanceWho was that person who came looking for you?

“First my dad went down to the city of La Paz, I live in El Alto. He read a paper whichsaid that blind people could get insurance and a social security payment, so I wasregistered in “Instituto Boliviano de la Ceguera (Bolivian Instituted for Blind People)” as a blind person, and there another person sent me to Sense International, wherethey work with blind and deaf people. This institution is helping me because they teach me and they help me with funds for transportation to and from school”.“In this country there are few people who are both blind and deaf. I meet very few,for example Mr. Fernando, which has no hands and is blind and deaf, he graduated from school and attends University, he said I was going to make it, with those wordsof encouragement I felt very content and I know we, blind and deaf people, can learn. At this moment I study, I can serve myself my own food, I clean my room, wash my shoes, ect. I can even help my mom wash the clothes”.

EducationAre you studying now?

“Yes I am, the center where I study is “Aprecia La Paz”,and it is free! I work withblind and deaf people, I learned how to write in brail, that was a little hard but I did it!” “When I was in 5th grade I lost my vision, I wanted to keep on going to regular school but I couldn’t t see the black board any longer, I would get close to it to beable to read what it had written on it, and my classmates never knew what washappening to me, in this way I finished that grade, after that I had to pass to 6thgrade, but I could no longer see, and I was afraid to go back. I didn’t want my friendslaughing at me, I didn’t want to keep on going, I was very sad”.“I’m also in CEMA (Education Center for Adults), my school is called “Liceo Francia”,and I attend from Monday though Thursday from 19hrs to 21hrs, Its very far away from my Center Aprecia, I have to go from one side of the city to the other”. “At school I hardly have any problems, my teacher dictates all the subject and I writedown notes, sometimes its difficult to hear because my teacher speaks in a low voice,

I always have to ask for her to please speak louder, but she always does and there isno discrimination, they treat me well”.“Thanks to Aprecia, I attend a regular school, they told me that I can study, that I’malready ready, “you have done everything you can here, there is nothing left for youto do, you have to attend a regular school”, my director is so nice, she’s alwaysencouraging me, I have learned more than just a blind person. At first I felt I wasnever going to write, I thought I was never going to be able to read but my teacher said to me here the word “I CANT” doesn’t exist! Here everyone can make it, you’regoing to be able to do it, don’t feel sad, it’s a long way, but you will succeed. And after a month I learned to read in Brail, everyone envied me!“I read and write master than my classmates and I’m admired for that! There’s no one who reads or writes so fast. It’s all up to you and how responsible you are, whatever you want to learn,you learn. I did everything in my power to beable to read and memorize, they told me that inone year I was going to advance the double, I have to take advantage of that! This is why I amin school.

Are there books in Braille to support yourstudies?

It’s such a shame! There are not many books inbraille, there is a little library in Aprecia, whichhas books on Bolivian literature and other topics,I love to read and I have read almost all of thebooks there. In my program there is a computer,so we take classes once a week and I would liketo learn more than just the basics.

Access and transport

During the interview, the subject of accessibility and transport came up so we decidedto ask him about his how he gets around in his daily life and he told us:

It was difficult to move from one place to another in the streets the first months of 2007; I would crash into people or the sidewalk, because I had not learned how towalk in this situation. I would run into the merchants who sold in the streets, or people who would walk in front of me, I didn’t know when they where going to stop soI would crash into them, they would get very mad but then turn around and noticethat I was blind and they would apologize. Few people know that blind and deaf people carry a cane with two different colors: red and white means that we have twodisabilities but if the cane is just white it means the person is just blind. I would lovethat people would know that!!!

Have you ever fallen or got hurt?

Yes!! I fell in a hole by my house, luckily I fell in standing up, if I had fallen down onmy back it would have been dangerous, I was lucky. I didn’t know the hole wasthere, some work man had done it, I fell in at night time when there was no onethere. I got out of there by myself! It was a tough experience, it really hurt me!!

Do you come down alone from El Alto?

My mom helps me cross an highway that is very dangerous; there is no crosswalk or stoplights, and cars fly past!! I can’t cross it by myself, so my mom helps me and then I take a bus to my centre Aprecia. Little by little they taught me how to walk with the cane, get on buses, so now I don’t have any problems; I come and go to my house with complete confidence! I don’t get lost either; I know what bus to take. Thefirst time I took the bus, I told the driver to let me out on street 17 in Obrajes, but hetook me to 17th street in Calacoto, the driver got confused so now I repeat my stopseveral times when I get on the bus!! It’s all about asking people for help not to get lost, right?

HealthWhen you get sick do you have health insurance?

My parents’ don’t have a salary, and none of my siblings have health insurance, just me and Limbert. I have never gone to the doctor; I don’t even know what I have.They’ve never checked my ears. My eyes yes, I went to a Cuban hospital and I wasrejected twice, doctors say there is a cure but they send me from one place toanother, and nothing!! Maybe there is no cure, who knows!

If you haven’t gone to the doctor, who told you to use a hearing aid?

Oh, I went to the speech and hearing therapist, she told me I had to use the hearingaid. I like it because I can hear many sounds, but if I don’t wear it I can’t hear anything, and then how could I learn new words? What example would I by to my teacher and classmates? I have learned various things with my hearing aid.

Alex thinks that ophthalmologists and the speech and hearing therapists are notdoctors; he thinks doctors only study the heart. We were informed by other sourcesthat 2 or 3 years ago Alex was to shy, he barely talked and was very scared.

Family

When I asked him about his family he got nervous and started laughing, he said: “

You’re going to laugh, I have 10 siblings!!, one died, and 11 of us are still living, theoldest one is Limbert, he is blind and deaf, he lives in a centre called Santa Cecilia(centre for blind adults), he studies there, we are independent, I am the third child.My dad worked in construction and my mom recycles things like bottles, ect. and sellsthem, with that she helps us with the daily bread. My house is small, the rooms aresmall, we suffered a lot the last 10 years because it was not ours, but this year wefinished paying for it, now I have my own room and live very happily!!I don’t have much support from my family, my dad and mom never haven’t come thisyear to my centre, in 2007 my mom came twice. I think she doesn’t want to comebecause she feels a bit embarrassed. She sometimes goes to Limbert’s centre, but for my reunions they never come. They tell me they don’t time, and also my siblingdon’t understand my successes, they just don’t go!My brother Limbert is very competitive, I think he is a little jealous of me, he’s alwayscompeting with me, and he knows I write better than he does in Braille, so he isalways bothering me. He has a strong character!